For Researchers

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Resource List for Researchers

This list will continue to evolve as new resources emerge. Please contact AFTD at research@theaftd.org if you would like to suggest edits to this page – either additions or removals.

Engaging with a Community with Lived Experience with FTD

As the largest advocacy organization dedicated specifically to the FTD Disorders, AFTD is committed to helping researchers understand the lived experience of FTD and providing people with FTD and their families resources to make informed decisions about participating in research.

To collaborate with AFTD on initiatives surrounding engagement of people directly impacted by FTD, such as focus groups and patient advisory councils, contact Dr. Shana Dodge at Research@theaftd.org.

To access FTD Insights Survey data or work with the FTD Disorders Registry, contact Director@FTDregistry.org.

Access more information on the 2021 Externally Led Patient-Focused Drug Development Meeting for FTD and accompanying Voice of the Patient Report here: https://www.theaftd.org/for-researchers/patient-focused-drug-development/.

Publications

Clinical Trial Networks

  • ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)
    • Over 20 sites in U.S. & Canada
    • The ALLFTD network is funded by the NIH to establish a large cohort of patients with FTLD syndromes including bvFTD, PPA (svPPA, nfvPPA), CBD, PSP, FTD with Motor Neuron Disease, and people with a family history suggestive of FTD. The goal of this study is to build a FTLD clinical research consortium to support the development of FTLD therapies for new clinical trials.
    • More information at https://www.allftd.org/

  • Genetic FTD Initiative (GENFI)
    • Over 30 sites in Europe & Canada
    • The GENFI research consortium enrolls symptomatic individuals and presymptomatic family members with mutations in the MAPT, GRN, or C9ORF72 genes. Clinical, functional, and neuropsychological assessments; biofluids; and MRI imaging data are collected using standardized procedures. Tau PET and retinal
      imaging were added in a second cohort enrolled beginning in 2015.
    • More information at http://www.genfi.org

  • FTD Prevention Initiative (FPI)
    • Over 300 researchers and 3000 participants across the world
    • The FPI brings together genetic FTD cohorts from across Europe, North America, South America, Australasia and Asia. Members include GENFI, ALLFTD, Dominantly Inherited Non-Alzheimer Dementias (DINAD) study in Australia, New Zealand Genetic FTD study (FTDGenZ), Research Dementia Latin America (ReDLat), South East Asia FTD Consortium, and LEAF-FTD in Korea.
    • More information at https://www.thefpi.org/

Biorepositories — Biofluids and cells

AFTD regularly receives requests for where to find biosamples! Please contact Debra NIehoff PhD at research@theaftd.org if there is a resource that should be added.

  • National Cell Repository for Alzheimer’s Disease (NCRAD)
    • NCRAD, located at Indiana University, provides common storage for clinical sites in the ARTFL-LEFFTDS consortium ALLFTD network, as well as the Genetic Investigation in FTD & Alzheimer’s Disease (GIFT) study. Samples include biofluids (plasma, serum, CSF), DNA and RNA, PBMCs (ALLFTD); and genomic/cell line DNA and lymphoblastoid cell lines (GIFT).
    • More information at https://ncrad.iu.ed
  • Genetic FTD Initiative (GENFI)
  • Clinical Research for ALS & Related Disorders for Therapeutic Development (CReATe)
    • Plasma, serum, CSF, DNA and RNA, buffy coat, PBMC, and urine samples from participants in Phenotype, Genotype, & Biomarkers in ALS & Related Disorders study; stored at John P. Hussman Institute for Human Genomics Biorepository at University of Miami.
    • More information at https://www.rarediseasesnetwork.org/cms/create/
  • NINDS Human Biospecimen & Data Repository (BioSEND)
    • Biofluids, DNA, and RNA collected in the course of NIH-funded biomarker research projects for FTD and other neurological disorders, including biospecimens previously housed elsewhere (eg., Coriell Institute for Medical Research); now stored at Indiana University.
    • More information at https://biosend.org/index.html 
  • NINDS Human Cell & Data Repository (NHCDR)
    • Patient-derived iPSCs & fibroblasts from individuals with FTD or ALS as well as other neurodegenerative disorders and healthy controls, housed at Rutgers under the auspices of RUCDR Infinite Biologics. Includes cell lines formerly located at the NINDS repository at Coriell; ALS-derived cell lines utilized by NeuroLINCS (see below under Databases) for transcriptomic, proteomic, & epigenomic analysis; and ALS-derived iPSCs generated by the Target ALS Human Stem Cell Core.
    • More information at https://nindsgenetics.org

Biorepositories – Postmortem tissue

  • Boston University UNITE Brain Bank
    • The UNITE Brain Bank is the largest tissue repository in the world focused on traumatic brain injury (TBI) and CTE. The brain bank contains more than 1,200 brains, including over 700 brains that have been diagnosed with CTE.
    • More information at https://www.bu.edu/cte/our-research/brain-bank/
  • Mount Sinai Neuropathology Brain Bank
    • The Brain Bank provides a flexible tissue repository platform to facilitate collection, characterization and distribution of tissues and data for clinical and translational research projects with a neuropathology component. Their platform provides images (gross, photomicrographs & scanned slides, brain tissue (fresh, frozen, fixed, and FFPE), neuropathology data and reports, and consultation services and training.
    • More information at https://icahn.mssm.edu/research/portal/resources/deans-cores/neuropathology/researchers
  • NIH NeuroBioBank
    • Fixed, frozen, and paraffin-embedded samples from a wide range of neurological and psychiatric disorders, including FTD, collected at 6 U.S. sites.
    • More information at https://neurobiobank.nih.gov
  • National Alzheimer’s Coordinating Center (NACC)/Alzheimer’s Disease Centers (ADCs)
    • NACC supports the collection and storage of fixed and frozen postmortem brain tissue by the ADCs, including tissue from individuals with FTD. Diagnoses,
      number of cases, and procurement/storage procedures differ among sites.
    • More information at https://naccdata.org/requesting-data/biospecimen-locator

Databases

  • National Alzheimer’s Coordinating Center (NACC) and NACC-FTLD Module
    • Curates cumulative database that includes standardized clinical, neuropathologic and MRI imaging data sets, contributed by Alzheimer's Disease Centers (ADCs). FTLD Module added in 2012 contains clinical data on 1,575 cases across the FTD spectrum. The Neuropathology data set also includes FTD cases. All data freely available to research community.
    • More information at https://www.alz.washington.edu/WEB/researcher_home.html
  • Laboratory of Neuro Imaging (LONI) Image & Data Archive
    • Provides integrated MR image management for participating studies. Access to data from NIFD and 4RTNI via data use application.
    • More information at https://ida.loni.usc.edu/login.jsp
  • Alzheimer’s Disease Knowledge Portal
    • The AD Knowledge Portal allows researchers to discover and download Alzheimer’s Disease data, analyses, and tools from the National Institute on Aging’s Alzheimer’s Disease Translational Research Program.
    • More information at https://adknowledgeportal.synapse.org/
  • Alzheimer’s Disease Preclinical Efficacy Database (AlzPED)
    • AlzPED is a publicly available, searchable, data resource that aims to increase the transparency, reproducibility and translatability of preclinical efficacy studies of candidate therapeutics for Alzheimer’s Disease.
    • More information at https://alzped.nia.nih.gov/
  • Alzheimer’s Disease Data Initiative (ADDI)
    • ADDI offers a free data sharing platform, data science tools, funding opportunities, and global collaborations, to advance scientific breakthroughs and accelerate progress towards new treatments and cures for Alzheimer’s Disease and related dementias.
    • More information at https://www.alzheimersdata.org/
  • Neuro Library of Integrated Network-based Cellular Signatures Data and Signature Generation Center (NeuroLINCS)
    • NIH-funded collaborative effort to construct disease signatures through analysis of molecular pathways in patient-derived iPSCs and neurons. Raw (accessed via dbGaP or Chorus) and processed (accessed via LINCS Data Portal) transcriptomic, proteomic, epigenomic data collected by 5 participating sites. Current focus on ALS and SMA; FTD may be added in the future.
    • More information at http://neurolincs.org/
  • Database of Genotypes and Phenotypes (dbGaP)
    • Archives and distributes data and results from a wide range of studies examining the interaction of genotype and phenotype in humans.
    • More information at https://www.ncbi.nlm.nih.gov/gap
  • New York Genome Center
    • A partnership of clinicians, basic scientists, geneticists, and computational biologists from 42 institutions across the globe – establishes a framework to apply whole genome sequencing (WGS) and functional genomics to the study of ALS. Currently, the ALS Consortium has sequenced 4,359 whole genomes and 2,348 RNA samples.
    • More information at https://www.nygenome.org/als-consortium/

Animal models

  • International Mouse Phenotyping Consortium (IMPC)
    • Consortium of 19 research institutions & 5 national funders worldwide creating knockout mouse strains phenotyped according to standardized protocol. ES cells and mice available from participating repositories, including the UC Davis KOMP Repository (see below).
    • More information at http://www.mousephenotype.org/
  • UC Davis Knockout Mouse Project (KOMP) Repository
    • NIH-funded, publicly available repository containing approximately 8,500 types of knockout mice as well as related products and services; located at UC Davis. Available to both for-profit & academic researchers.
    • More information at https://www.komp.org/
  • The Jackson Laboratory
    • Major supplier of >8300 inbred, hybrid, and mutant mice as well as precision mouse models generated using CRISPR/Cas9 technology.
    • More information at https://www.jax.org/

Registries

  • FTD Disorders Registry
    • Contact and research registry for FTD disorders. Persons diagnosed with any FTD disorder are eligible to join (independently or with the help of a care partner), as are family members, past and current caregivers, and friends. Over 52000 participants enrolled to date.
    • More information at https://ftdregistry.org/
  • Centers for Disease Control (CDC) National ALS Registry
    • Congressionally mandated population-based registry intended to collect data on incidence/prevalence of ALS and potential risk factors. Persons over 18
      with ALS are eligible to join.
    • More information at https://www.cdc.gov/als/Default.html